I’ve been writing off and on since I was in 7th grade. I really got serious about it in 1999 when I finally finished a book. Yay!

It was awful!

I know you’ll say that I’m my own harshest critic but I’ve still got the original manuscript and it is quite literally rubbish.

The hardest part of writing is to get it all finished, to actually write a book with a beginning, middle and end then have it end! It’s hard to see it through to the very last page. It can be utterly exhausting to get it all down on paper but I’ve made a pattern I can follow now and I use it to create other books. The goal of writing is to get it all down and then to start editing it, changing this part or that part, making sure all the verb tenses are correct and that words are spelled correctly. I still have that book I wrote in 1999 in it’s original content and I have what it became after several years of editing. The two look nothing alike except for the characters’ names. Editing is supposed to be horrible but I found it to be so much fun. I enjoyed playing with the characters and trying new ways to make the dialog and the story interesting.

I’m looking into self-publication and what that might mean. I need to get some legal advice and ask questions and do some research but next year could be the year. With that said, I must say that writing was the most exciting, exhausting and liberating thing I’d ever done.

When I started caring for my mother and having flashbacks of what it was like being raised by a woman with full blown schizophrenia, I had no where to put all my feelings and those terrible memories I’d worked so hard to forget before they came back at the worst possible time. Writing gave me that outlet. It wasn’t like a diary nor was it a memoir. Instead it was a way to make use of those things, to put what I was feeling into words on a computer screen and make them behave. That’s the hardest part, making the characters behave. They often go off and do things I never, as the writer, wanted them to do! Then I have to find out how they’re going to get themselves out of that. But, I also confess to going back and rereading books I’ve written when I’m feeling down or sad. Oddly enough, I don’t remember what I was feeling when I wrote them. All I have left are the characters and the choices they made.

I grew up on print media. Holding a book in my hands is how I was raised. I’m hip though and I love Kindle and digital is the wave of the future. I’m not sure how I’ll feel when my book is finally published and ready for people to read and critique. I’m not as attached to that first book as I was so many years ago when it was like something sacred I gave birth to. Now it’s just a book, taking up space on my hard drive. But going into print could change that.

I may never see my book in print, not in the traditional way. Handheld books are quickly becoming a thing of the past. I’ve recently delved into Audible and discovered I really like it. I can read and crochet at the same time! But having my book out there will be an experience and, whatever happens, my life will never be the same.

I’ve been cleaning Dad’s house. He’s got some serious hoarding issues going on and I’ve been trying to get things organized so we can enjoy our spaces and not cringe when we walk through those rooms.

In my cleaning, I happened upon an old relic of earlier days. When I was about maybe sixteen, my grandmother bought me a sewing machine. It was a Singer, was gorgeous, had all the features (those available in 1986) and could sew beautifully. I used it a lot, making things, quilting, altering garments, various projects. But it got old. By the time I was in my 30s it was already as old as I had been when I received it. I got a second one just like it I found on ebay for parts.

Fast forward. It’s now twice as old as I was when I received it and I’ve since purchased a newer one which has all the features it had and more. As I’m staring at this relic from the past, I’m feeling all these emotions come up. My grandmother gave me this about five years before she died in 1993. At the same time, do I keep it? I got rid of the one I was using for parts a decade or more ago. This is bulk trash week in our area and I know someone would pick that up quick. If not, Waste Management will. But the idea of it sitting out there waiting for someone to come take it makes me feel a certain way.

I’ve really had no compassion on my Dad while I’ve been cleaning. Fact is, if EMTs came in and saw the state of some of the rooms in this house, it could create problems for him. As his daughter, I’m there to solve those problems before they become really big issues. So I’m tossing a lot of stuff and I hear him sigh and tell me, “I had planned to do something with it.”

Dad didn’t plan on getting sick. None of us do. But the things he values absolutely boggle my mind. Why does anyone keep stuff anyway? None of what I’m finding creates in me the wish to store and protect. Until I came across the sewing machine. But if I’m going to be ruthless with Dad’s stuff I must be the same kind of ruthless with mine. I haven’t used this machine in over twenty years because it needs servicing, service that will likely set me back more than what buying the new one did. Why hang onto it? Instead, just remember in the sewing machine I have now the love of crafts and creation that my grandmother fostered in me. Get rid of the old and invite in the new. Let go.

So I quit my day job as a food pantry coordinator to be a full time pester Dad caregiver. He’s still up and able to get around but he’s worn out with a lifetime of diabetes and has been on dialysis for four years now. To say that mostly I supervise is not quite the whole picture but it’s close.

Mostly my job is to make sure the trash gets out. My Dad will keep anything and everything. If I try to get rid of something, an old shelf or some broken piece of furniture, he’ll say “NO, let’s keep it. Put it in the sunroom.” Need I tell you what the sunroom looks like?

So I’ve made my tasks, or rather one of my tasks, the cleaning and organizing of the sunroom. In my mind, I saw myself happily tossing stuff to the curb and freeing us of the horrible bondage of hoarding. I also try to educate my Dad. If you keep it in a cardboard box, that is hoarding. If you buy a cute little sequined storage box for it, that’s called interior decorating.

Well, he’s not a fan of interior decorating. “I have a plan for that,” can be said of most of what is out there. I have a plan for it too. I see it laying on the curb waiting for the city to come get it! Sadly, it’s not my house and I may have to wait to do the purge I imagine myself doing.

But at least I’ve got one thing on my side. My Dad misses the room he once had to putter around in. Now that he’s tired more often sometimes he’ll just go and sit in the sunroom. Hard to do that when every surface is covered with stuff that needs to be thrown out.

So I’ve got 4 more days of employment before I’m a full-time caregiver again. I am ready to have only one job and not be pulled in a hundred directions but I believe I will miss my work and being part of a team and I will really, really miss my favorite clients.

I said a fond farewell for a while, not goodbye since I “intend” to volunteer when I can, to one of my older clients, an elderly gentleman who spends almost as much time in the hospital as he does at home. He always comes in and asks for a cold pop and someone in the pantry will donate the money to buy it from the vending machine.

I’ll miss that. The older crowd coming in to visit and chat with us. They’ll ask questions about information, useful news about what might be on the horizon for the pantry. “Is it time to sign up for Christmas yet?” Or news about donations or why is all the food gone. Well, school does start next week. After spending money on all those supplies, mamas are coming in to get food now.

I’ll miss the activity and the jumble of tasks always needing to be done. I’ll miss the volunteers, those who are court-ordered and those who are just willing to give back. I’ll miss the employees who constantly circulate through the building, most with smiles and greetings and “What did you get in today? I forgot to bring my lunch!”

I’m sure I’ll miss all of that while I’m sprucing up the house to get it ready for whatever is coming. And I need to take more time for myself, to rest and do the things I really enjoy. I’ve discovered over the last two weeks that I really like Audible books and being read to while I crochet or knit. Typically, I would spend so much time on housework when I wasn’t at work that I hardly had time to pull out a craft but I’ve been working double time this last couple of weeks to get things into position. It just feels good to know that soon I’ll have time to smell the roses, even if there aren’t any because it’s a 102 outside.

But I’m sure days will come when I’ll want to go back to the Army and hang out with my friends and colleagues – though we won’t be colleagues anymore. I won’t really be part of the crew but I’ll probably still bring cookies because people can smell ’em as soon as they come in the door. Shout out for Tiff’s Treats! Just like Popcorn, everyone knows when there are cookies!

My cats have been seriously missing time with me. I’m either gone or too tired to pay attention to them. I look forward to vet visits in the next few weeks. I’m sure after that, they’ll be ready for me to go back being gone all day!

And I’ll get to supervise Dad who has been home alone for a good deal of time. Well, his joy is over. I’ll be there now to tell him why whatever it is he’s thinking about doing is probably a bad idea.

I can’t count how many times I say that to myself. I’m tired, overworked, overwhelmed, a caregiver with a job, dealing with my Dad’s chronic illness, dealing with my own chronic conditions and with probate from a recent death in the family and with all the twists and turns that is life.

But as a caregiver I’ve always been the first to say, “I’m okay.” After all, what is now won’t always be. Just because it’s hard doesn’t mean it won’t get easier. So I keep on putting one foot in front of the other and I don’t really think about myself when I cut another thing I enjoy doing from my routine because there simply isn’t time for it anymore. It’s the life of a caregiver. It’s what I’ve been doing for 30 years off and on, caring for Mom, Grandmother, my Uncle and now Dad. I’ve told myself I’m okay over and over and just pressed on and kept moving.

But when I had a conversation with one of the ladies at work, basically trying to figure out how I could resuscitate 12 hours of vacation time I really had been hanging onto, this time that was to be mine and mine alone, this precious time that was to be vacation from everything and not just one of my duties but all of them. I really need more than that. I have a To-Do list that never gets completed. It just gets longer and longer and I keep marking stuff off of it not because it’s been done but because I just can’t get those ends to meet up, much less tie them together. I really had not realized how desperately I was hanging on to those 12 hours until I had to use them for something else, basically giving up that precious vacation time for a more practical caregiving use.

So, with that in mind and knowing that another Christmas is coming when I will be busier than I should be, unable to see to any of my needs, knowing Dad is not getting better but is actually losing a bit of ground each year, knowing that work is going to continue to take up more and more of my time. Knowing that we’ll have another year of no holidays because I’m too tired to do anything for them. Knowing that I should enjoy my Dad while he’s here and make every moment count.

I love my work at the Salvation Army and enjoy it most of the time. But I can’t enjoy it when I just wish I could fit in these other things that I need to take care of too. But the only time I have to do these things are after 9pm when everything is closed and by 10 I’m ready for sleep.

And I’ve been here before. I’ve said it thousands of times. I can do it. I’m okay. It’s just for now not always. But this time I refused to say it. I’m not okay. I need to rest and I need to get some very important things done for my Dad and for myself too. I need to stop demanding so much of myself and allow myself time to do all the things I love and have been denying myself. I need to admit I have needs too.

So I’ve resigned. I gave them a month so I wouldn’t miss out on some of the great things happening there but when that is over I will be saying goodbye to employment at the Salvation Army. I might still volunteer but probably not for a while. But it’ll free up time for me to fit in more for me and to get some things done to get the house ready for Dad. I’ve got a feeling his situation is about to change and I want to be ready. It’s what a caregiver does. I want to enjoy sunrises and sunsets and not be too tired to smell the flowers. And I will go back to the Salvation Army one day when I’m able and ready to take on that task of Doing the Most Good.

For now that means taking care of myself and also of Dad. Because life is short and there’s no reason I should be miserable, pulled in a thousand directions. I need to be able to fit back in some of what I enjoy. So much has been ignored because there wasn’t time. I would like to add in some of the joys I once had and also tackle that To-Do list. When Christmas comes, I want to have time to go through all our routines like we used to. I want to be able to sit down and watch a movie or watch a sunset or sunrise and not be too tired to enjoy it. I need to slow down so I can be present in my own life. Just because I can doesn’t mean I should keep going and going and going, and telling everyone I’m okay. Because I’m not. I’m tired.

So I was insulin dependent for about 7 years and things were okay. I lost some weight and managed to keep it off. Life was manageable.

Then I got a job and the Marketplace Insurance. They told me my A1c was too low for insulin. I’m like “You do realize my A1c is this low because I’m on insulin, right?”

Apparently they didn’t care. As doctors they had a script they had to follow and that script said Metformin. It didn’t work for me. It messed up my eyes, kept my blood sugars at 250 or above all the time regardless whether I ate or not. I took it for a month and then stopped it and changed doctors.

But I kept my A1c down because I watched what I ate and exercised. (Before Metformin, I was walking 3ks. I can’t do that now but I’m gradually recovering from what that medication did to me.) So low in fact I was informed they could never, ever prescribe insulin for me. So I was literally on my own with no medications to treat my disease except those which would make me sicker faster.

Enter natural medications. I know some people are skeptical. But I kept my A1c down below 6.5 for three years. However, I’ve got a problem. I’m getting older and all this stress of caregiving is really starting to take a toll on me. I’ve been through a lot in the last 2 years and although my To Do is like 7 pages long I don’t ever seem to make much progress or, if I do, manage to accomplish something, it then creates another page of stuff to do as a follow up to what I accomplished.

The lonely battle is that I had some kind of reaction earlier this year to something I was taking. My heart rate sped up. I started feeling like I was on speed or seriously over caffeinated. I stopped everything and took myself off all my herbs slowly over a period of about four weeks and managed to get back to normal.

In every way but one.

I stopped the Bitter Melon that had been working fantastically and started up with the Fenugreek, another herbal that affects blood sugars. And it worked great for two weeks then mysteriously stopped. I can’t figure out why it stopped but I’m not at my best. Exercise with Bitter Melon meant that I burned up sugar and was okay. With this new stuff, I can exercise until I drop from exhaustion and it has no effect on my blood sugar. So, back to Bitter Melon because the next step is going back on insulin. Because I’ll never get down to my goal weight if my fasting blood sugars are in the 160s.

When I was extra, super, overwhelming stressed caring for mom in her dementia, I stayed on the insulin and my fasting blood sugar was always high because I was under so much stress! Now it’s the same. I’m back in an uncomfortable place and hoping I can get out of it as soon as I can. I don’t feel great. I don’t feel terrible but I don’t feel like I want to feel.

So here it goes. Half a Bitter Melon. And if that doesn’t work then I’ll call the doctor and tell them I need to get fitted in somewhere on the schedule so I can fill them in on my situation. They already know most of it and everyone agrees I’m doing too much. But there’s no rest for the carers of the world. You just have to keep soldiering on and hope that a Higher Power can make things work whenever things just aren’t working at all.

So we went to the PCP and she does her little spiel about all she can do for us. Then she suggests this new medication because, she says, it will grow new nerves. Uh, if that were true, you wouldn’t be telling us about it. Word of mouth would have us asking for it.

So we get the new med and Dad starts it and the doc says take it for a month so we’ll know if it works. Wait. What?

Fast forward one month. Dad was cleaning out his wallet and lost his ID cards. His memory is so bad he started asking me, “We live here?” I mean, it was night and day, a bad example of what medications can do to the elderly. And some cognitive impairment is normal with age. All of the horrible things he did when I was a kid he has absolutely no memory of. That’s completely normal and I know this because all the people my age have parents with the same lousy memory of their tragic childhoods. But for him to misplace his insurance card in the five minutes he was cleaning his wallet – that’s not cool.

So we’re not taking that anymore. It got so bad even the dialysis clinic called me and we had a bit of a discussion about it. So I know it’s not just here at home that it’s happening. And I know it freaks him out too. No one wants to have that happen to them. No one wants to be forgetting things that are important and insurance cards for someone in his position are very important. Yes. The doctors already have copies but you have to be able to produce proof that you still have that insurance. Just in case they ask.

So I’m hoping things return to normal here and he can go back to remembering what I’m fussing at him about. It’s hard when he forgets what I’m nagging him for. Takes all the fun out of it for me.